u/Routine-Economist932

I have posterior uveitis.

Sarcoidosis has been the leading potential diagnosis for underlying cause. I’ve had 2 different reads of the same chest CT. 1 radiologist finding a nodule in my right lung, another radiologist not finding any indication of sarcoidosis.

I’ve had extreme fatigue, cough, night sweats (every night), persistent shortness of breath. I can live like this but these symptoms are definitely impacting my quality of life, work, and relationships.

The radiologist that reports no sign of sarcoidosis, is in the same health system as the pulmonary and rheumatology specialists I was hoping to see for treatment. But without an indication for them to proceed, I assume I’m not going to be accepted for referrals.

Anyone have a similar experience? Just getting stuck with symptoms beyond eyes and no plan to find a cause?

Does anyone here get prescribed methotrexate or biologics even without ever discovering an underlying cause for your uveitis?

I’m starting to think that for my mental health, I may need to hit pause and just accept that I can get treatment from my uveitis specialist but take a break from pursuing an answer for an underlying cause or treatment for the other symptoms.

I’m still fairly new to this but so far, I’ve seen an optometrist who sent me to an ophthalmologist to retina specialist to uveitis specialist.

As a nodule was found in my lung, I expect to be sent on to a pulmonary specialist, maybe a rheumatologist?

My PCP is aware and responsive but should I be identifying or requesting that 1 Dr take the lead on communications and collaboration with all of these providers?

This is starting to feel very fractured and like no one is really “in charge” but again, I’ve only been at this since April so I’d love to hear from others if this is just standard.

I’m doing my best to make sure records and tests are shared to each new Dr and back to previous Drs before each new appointment. I accept the responsibility to advocate for myself but is there a better way to do this?

Should there be a captain of the ship here? Or is my experience the norm?

Thank you for any guidance!